When a former dialysis industry insider steps away from their calling, torn between the devotion to patient care and the stark reality of corporate healthcare, you know there's a powerful story to be shared. We welcome this courageous guest to unravel the complexities of dialysis care in the U.S., a narrative marred by an ethical tug-of-war between patient-centered care and the efficiency-driven mentality of large-scale operations like DeVita.
Our conversation travels from Ohio to Los Angeles, across the heartbeats of patients who've become mere numbers, through the corridors of standardized healthcare that often overlooks individual needs. The episode not only casts a critical eye on the consolidation of dialysis practices but also illuminates the empowering tales of patients and families who've taken charge – navigating the healthcare maze with tenacity and self-advocacy. It's a call to understanding, a nudge towards engagement, and a testament to the idea that connectivity can be a lifeline – whether that's through technology or the solidarity of shared experiences. Join us as we confront the status quo and explore the profound impact of empathy and education in healthcare.
With hosts Maurice Carlisle and Ira McAliley
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:22):
In early 2000,.
A company by the name of DaVitawas created and that company
used a corporate model and itwasn't a non-profit, it was a
for-profit business.
Today they're one of thelargest providers of dialysis
services in this country and sothat speaks to that.
(00:46):
They've done very well takingcare of dialysis patients.
They're building centers allover the country, and so that's
kind of illuminating to me isthat the companies before them
didn't get as big as they are.
There's a reason for that.
I understand that when thisfirst happened it was the idea
(01:09):
of standardizing the process.
If you had all these differentnon-profits and all these
different companies, all of themhad their own separate kind of
standard and then there was agoverning body which is Centers
of Medicare Services, who paysthem, and they kind of oversaw
all of these different companiesand that these consolidations
(01:29):
made it easier for them to beable to work with this
particular companies andstandardize this practice.
But on the ground level, forwhat I do at the process of the
service level, it was a bad idea.
What we're seeing is patientsbeing treated as numbers, and
(01:52):
this was very difficult for mebecause I in fact left the
industry for a while.
I spent nine months away fromthe industry, even though I know
this was my calling.
I stayed away from it because Icould no longer be a part of
what I believed was a systemthat was counterproductive to
(02:12):
what patients actually needed.
Yes, from the baseline level ofit, we are providing a service
and they are living.
They are leaving in most casesbetter than what they came in,
but in many cases they are not.
That's that tug of war thatI've been having and this is the
(02:33):
result of that.
This is my way of still helpingpatients but looking at the
issues and trying to help thepeople who are running these
companies or these corporations,see that there's something
beneath all of this that isunethical, that we have to be
(02:56):
ethical in what we're doing andthat if we make these people out
to be just like car parts in afactory, and that they, you know
, they mean, you know that, youknow if the quality's up, you
know we met those four, you knowkey indicators and that this
part is, you know, qualityassured and we're just sending
that part out into the worldwhen we know that's just not the
(03:18):
case.
But we met all of thegovernment standards.
We didn't go above and beyond,but we just met the standards
that this person is gonna beokay, and that's just not the
case.
And so those are just a tip ofthe iceberg on how I got here
and how we ended up doing this.
And what led me to do this isthat I just couldn't.
(03:39):
I couldn't watch anymore aspeople were treated as parts.
Speaker 3 (03:43):
Great, something else that's come up, and I know this
for some of the people thatwe've had conversations with and
that we'll get back to, and youknow we'll do some more
interviews with those folks, andyou know, you and I have been
at this for some years andtrying to figure out the best
way to present it.
And you know, thankfully Zoomhas come along and we can
produce these things and we canget them out to the world fairly
(04:06):
easily.
Like at a point we were talkingabout traveling the country and
meet with folks, and that maystill happen, but like now, you
know, for whatever reason, theworld as it is has made it
easier for us to do this andhave conversations with you
being in Ohio and me being inLos Angeles, and you know the
(04:27):
people that we talked to, mysister in Florida and you know
my friend Elliot, who's here inthe Valley and what have you.
But my point is what I wasgonna say is that we've spoken
to people who are findingsuccess in their treatment
because of the research thatthey've had to do themselves,
(04:50):
right, right, and not everybodycan do that.
Not everybody has the energy orthe time or just like the
education, to know where to getthe education.
You know what I mean.
So we're serving that role in away, but something that I think
is gonna be important movingforward is empowering those
(05:13):
people who are going throughthat process, not only the
people that are being affectedby their kidney dysfunction or
their kidney you know, theirlack of, you know, function in
their kidneys but the peoplethat love them, the people that
are around them.
You know, like how do I help mysister?
Like how do I help somebody inmy family who's going through
(05:37):
something?
Or a friend, like how do I?
You know, because if thepatient doesn't know what's
going on, you know nobody aroundthem knows what's going on.
Right, right.
So, I think that's like a bigpart, because I'm like I wanna
add value, Like how can I help?
Right, how can you help?
Yeah, you know as well as howcan I keep myself from going
(05:58):
down the same path.
So you know, just briefly, justtalk about that element of how
are we going to empower thepatient to become their own best
advocate.
Speaker 2 (06:14):
Yes, absolutely, and I think that starts with just
educating them.
And when I first started we hadno education, so patients came
in and they learned on the fly.
It's like showing up for workand not knowing what your job is
and someone telling you andshowing you what your job is and
(06:35):
then you having to perform it.
You know it's gonna take youtime, maybe weeks, maybe months
to wrap your head around exactlywhat you're doing.
You can do the process of it,but you don't know what that
process is actually doing, right.
And so when I started indialysis in the late 90s, there
(06:57):
wasn't an education program forpatients.
And then in 2000, when theycorporatized some of the
companies, then those companiesbegan to roll out education
programs, but I became a part ofthat process.
I knew that that was like apassion, but so I began to teach
(07:19):
those classes.
What I found in that process isthat then the doctors were
reluctant to send me thepatients to have that
conversation, and I stillhaven't figured out what the
reluctancy is in educating apatient, and maybe through this
process we will figure that outand why some doctors are
(07:40):
reluctant to educate theirpatients, but at the end of the
day, these patients have no clueof what's happening and they're
just being blindsided.
And so I think the idea ofcreating that class for patients
, for family members, and evenwith this Zoom even when family
members watch this Zoom in ourseries that they are gonna get
(08:03):
some knowledge about what theirfamily members are going through
, what's important to help themwith.
Whether it be and it really getsback to what we eat and that is
90% of what these patients areexperiencing the foods that they
(08:24):
need are so expensive that theycan't afford them.
They're going to dialysis threedays a week and they're not
working.
They're on disability.
That's another thing we need totalk about is these patients
are disabled, but when they goto the grocery store, there's no
break on the groceries.
There's no cheaper route forthem to get the foods that they
(08:46):
need, and so then they get thefoods that they can afford, and
the foods that they can affordare gonna kill them.
It's gonna make our process anddialysis more difficult.
Their labs are gonna be out ofrange all the things that we're
requiring of them.
They're not gonna be able tomeet with the foods that they
have to afford to eat.
Speaker 3 (09:06):
That's a great place for us to kind of close this
episode up and just havingstated what our pathway is, the
reason why we're on that pathway, knowing that it's overall
education not only for us, butalso just digging into what are
some of the root problems.
Also, how can we affect change,how can we make the different
(09:30):
elements understand each other?
And so that's what people haveto look forward to.
That's what we're gonna do herewith what's the deal with
dialysis?
We're gonna help people answerquestions and we're gonna answer
them for ourselves and you,being the person that's been in
the industry, your perspectiveyou are the best person to ask
(09:53):
those questions and to answersome questions.
Basically, you take a questionfrom somebody and go to all
right, where can I find theanswer to that?
And, in that answer, affectchange so that this person who
has the question feels betterabout what their options are.
Speaker 2 (10:19):
What their pathway is .
Yeah, and I just wanted to addto that All of this came from
stories that I was being told bypatients and what their
experiences were before andwhile they were having dialysis.
So I wanna make that clear.
And what I found somethingsuper interesting I alluded to
(10:40):
it a little bit and I just wannajust touch on it just a tad bit
is the idea of narrativemedicine, the idea that someone
else's story can heal someone,that it can empower them, that
it can enlighten them, that itcan inform them.
And that's what we want to dohere the stories, the people
that we will interview and talkto.
(11:02):
Their stories will empowerpeople who otherwise don't feel
empowered at all, who feel likethey don't have any decision
making in this process, thatthey've been given a doctor,
that they've been given a siteto have their dialysis, that the
manager at that site has beengiven to them.
They didn't pick any of thosepeople, they didn't get to
(11:23):
decide what modality they wanted, because they didn't know that
there were modalities, thatthere were options.
These people are being led intoa process and to an industry
that's benefiting from themwithout ever having to do a
thing for them, not even havinga conversation with them, and so
that's what we want to stop.
(11:43):
We want to affect that changehere, and so this is a sort of
narrative medicine.
We're going to use Elliott'sstories, we're going to use
Vowel's story, we're going touse Alphela's story, people that
we've interviewed already andpeople that we're going to
interview in the future andtheir stories will empower
people and will educate them andwill give them pathways that
(12:04):
they can think about or waysthat they can figure out their
situation by seeing what someoneelse did and how successful
they were not successful withthat.
Speaker 3 (12:15):
So that comes under.
I mean, and you know me, it'sall about inspiring others to
inspire others, like that's it.
Like somebody else's, somebody'sstory can inspire you, and you
know, to take a path right.
And so, as we are inspired bythe people that we interview,
(12:37):
like we're going to pass thatinspiration on to other people,
and that's how we make change,that's how we affect each other
and that's how we, as humanbeings, can be our best selves,
because we care, because we'recompassionate, because we just,
you know, we want a better.
Everybody wants a better life.
Everybody wants to be happy,right?
(12:58):
And when your health is in thebest shape, it's hard for you to
find that, that state of mind,of happiness.
So it is very difficult, andthat's why they call wellness
right.
You know, yes, and so thank youfor that.
You know that addition, that'sa great perspective and I think
people should know that that is,you know that's our approach.
(13:20):
You know we're taking the humanapproach to all of this.
You know it's about humanbeings.
It's it starts with thosepeople sitting in that chair and
the people that have affectedyou in a way that you feel like
you need to go to bat for themand for the ones that are coming
and for the ones that have noidea what's going on in their
life.
Speaker 2 (13:39):
So, yeah, so here we are.
I owe them a great deal, manRight, so here we are closing up
another.
Speaker 3 (13:48):
you know what's the deal with dialysis.
We'll be back.
Hopefully we've added somevalue to you and some
perspective.
I know that every time I have aconversation with you, I learn
something new and I grow, and Iwill pass that on.
So come back, see us again onwhat's the deal with dialysis,
(14:08):
please do.
In the meantime, just do yourbest to stay well, do your best
to educate yourselves, be yourbest advocate and, you know,
come back and help us inspireothers.
Speaker 2 (14:21):
So absolutely Be well , yes, indeed.
Speaker 3 (14:25):
Have a wonderful day.
In early 2000,.
A company by the name of DaVitawas created and that company
used a corporate model and itwasn't a non-profit, it was a
for-profit business.
Today they're one of thelargest providers of dialysis
services in this country and sothat speaks to that.
(00:46):
They've done very well takingcare of dialysis patients.
They're building centers allover the country, and so that's
kind of illuminating to me isthat the companies before them
didn't get as big as they are.
There's a reason for that.
I understand that when thisfirst happened it was the idea
(01:09):
of standardizing the process.
If you had all these differentnon-profits and all these
different companies, all of themhad their own separate kind of
standard and then there was agoverning body which is Centers
of Medicare Services, who paysthem, and they kind of oversaw
all of these different companiesand that these consolidations
(01:29):
made it easier for them to beable to work with this
particular companies andstandardize this practice.
But on the ground level, forwhat I do at the process of the
service level, it was a bad idea.
What we're seeing is patientsbeing treated as numbers, and
(01:52):
this was very difficult for mebecause I in fact left the
industry for a while.
I spent nine months away fromthe industry, even though I know
this was my calling.
I stayed away from it because Icould no longer be a part of
what I believed was a systemthat was counterproductive to
(02:12):
what patients actually needed.
Yes, from the baseline level ofit, we are providing a service
and they are living.
They are leaving in most casesbetter than what they came in,
but in many cases they are not.
That's that tug of war thatI've been having and this is the
(02:33):
result of that.
This is my way of still helpingpatients but looking at the
issues and trying to help thepeople who are running these
companies or these corporations,see that there's something
beneath all of this that isunethical, that we have to be
(02:56):
ethical in what we're doing andthat if we make these people out
to be just like car parts in afactory, and that they, you know
, they mean, you know that, youknow if the quality's up, you
know we met those four, you knowkey indicators and that this
part is, you know, qualityassured and we're just sending
that part out into the worldwhen we know that's just not the
(03:18):
case.
But we met all of thegovernment standards.
We didn't go above and beyond,but we just met the standards
that this person is gonna beokay, and that's just not the
case.
And so those are just a tip ofthe iceberg on how I got here
and how we ended up doing this.
And what led me to do this isthat I just couldn't.
(03:39):
I couldn't watch anymore aspeople were treated as parts.
Speaker 3 (03:43):
Great, something else that's come up, and I know this
for some of the people thatwe've had conversations with and
that we'll get back to, and youknow we'll do some more
interviews with those folks, andyou know, you and I have been
at this for some years andtrying to figure out the best
way to present it.
And you know, thankfully Zoomhas come along and we can
produce these things and we canget them out to the world fairly
(04:06):
easily.
Like at a point we were talkingabout traveling the country and
meet with folks, and that maystill happen, but like now, you
know, for whatever reason, theworld as it is has made it
easier for us to do this andhave conversations with you
being in Ohio and me being inLos Angeles, and you know the
(04:27):
people that we talked to, mysister in Florida and you know
my friend Elliot, who's here inthe Valley and what have you.
But my point is what I wasgonna say is that we've spoken
to people who are findingsuccess in their treatment
because of the research thatthey've had to do themselves,
(04:50):
right, right, and not everybodycan do that.
Not everybody has the energy orthe time or just like the
education, to know where to getthe education.
You know what I mean.
So we're serving that role in away, but something that I think
is gonna be important movingforward is empowering those
(05:13):
people who are going throughthat process, not only the
people that are being affectedby their kidney dysfunction or
their kidney you know, theirlack of, you know, function in
their kidneys but the peoplethat love them, the people that
are around them.
You know, like how do I help mysister?
Like how do I help somebody inmy family who's going through
(05:37):
something?
Or a friend, like how do I?
You know, because if thepatient doesn't know what's
going on, you know nobody aroundthem knows what's going on.
Right, right.
So, I think that's like a bigpart, because I'm like I wanna
add value, Like how can I help?
Right, how can you help?
Yeah, you know as well as howcan I keep myself from going
(05:58):
down the same path.
So you know, just briefly, justtalk about that element of how
are we going to empower thepatient to become their own best
advocate.
Speaker 2 (06:14):
Yes, absolutely, and I think that starts with just
educating them.
And when I first started we hadno education, so patients came
in and they learned on the fly.
It's like showing up for workand not knowing what your job is
and someone telling you andshowing you what your job is and
(06:35):
then you having to perform it.
You know it's gonna take youtime, maybe weeks, maybe months
to wrap your head around exactlywhat you're doing.
You can do the process of it,but you don't know what that
process is actually doing, right.
And so when I started indialysis in the late 90s, there
(06:57):
wasn't an education program forpatients.
And then in 2000, when theycorporatized some of the
companies, then those companiesbegan to roll out education
programs, but I became a part ofthat process.
I knew that that was like apassion, but so I began to teach
(07:19):
those classes.
What I found in that process isthat then the doctors were
reluctant to send me thepatients to have that
conversation, and I stillhaven't figured out what the
reluctancy is in educating apatient, and maybe through this
process we will figure that outand why some doctors are
(07:40):
reluctant to educate theirpatients, but at the end of the
day, these patients have no clueof what's happening and they're
just being blindsided.
And so I think the idea ofcreating that class for patients
, for family members, and evenwith this Zoom even when family
members watch this Zoom in ourseries that they are gonna get
(08:03):
some knowledge about what theirfamily members are going through
, what's important to help themwith.
Whether it be and it really getsback to what we eat and that is
90% of what these patients areexperiencing the foods that they
(08:24):
need are so expensive that theycan't afford them.
They're going to dialysis threedays a week and they're not
working.
They're on disability.
That's another thing we need totalk about is these patients
are disabled, but when they goto the grocery store, there's no
break on the groceries.
There's no cheaper route forthem to get the foods that they
(08:46):
need, and so then they get thefoods that they can afford, and
the foods that they can affordare gonna kill them.
It's gonna make our process anddialysis more difficult.
Their labs are gonna be out ofrange all the things that we're
requiring of them.
They're not gonna be able tomeet with the foods that they
have to afford to eat.
Speaker 3 (09:06):
That's a great place for us to kind of close this
episode up and just havingstated what our pathway is, the
reason why we're on that pathway, knowing that it's overall
education not only for us, butalso just digging into what are
some of the root problems.
Also, how can we affect change,how can we make the different
(09:30):
elements understand each other?
And so that's what people haveto look forward to.
That's what we're gonna do herewith what's the deal with
dialysis?
We're gonna help people answerquestions and we're gonna answer
them for ourselves and you,being the person that's been in
the industry, your perspectiveyou are the best person to ask
(09:53):
those questions and to answersome questions.
Basically, you take a questionfrom somebody and go to all
right, where can I find theanswer to that?
And, in that answer, affectchange so that this person who
has the question feels betterabout what their options are.
Speaker 2 (10:19):
What their pathway is .
Yeah, and I just wanted to addto that All of this came from
stories that I was being told bypatients and what their
experiences were before andwhile they were having dialysis.
So I wanna make that clear.
And what I found somethingsuper interesting I alluded to
(10:40):
it a little bit and I just wannajust touch on it just a tad bit
is the idea of narrativemedicine, the idea that someone
else's story can heal someone,that it can empower them, that
it can enlighten them, that itcan inform them.
And that's what we want to dohere the stories, the people
that we will interview and talkto.
(11:02):
Their stories will empowerpeople who otherwise don't feel
empowered at all, who feel likethey don't have any decision
making in this process, thatthey've been given a doctor,
that they've been given a siteto have their dialysis, that the
manager at that site has beengiven to them.
They didn't pick any of thosepeople, they didn't get to
(11:23):
decide what modality they wanted, because they didn't know that
there were modalities, thatthere were options.
These people are being led intoa process and to an industry
that's benefiting from themwithout ever having to do a
thing for them, not even havinga conversation with them, and so
that's what we want to stop.
(11:43):
We want to affect that changehere, and so this is a sort of
narrative medicine.
We're going to use Elliott'sstories, we're going to use
Vowel's story, we're going touse Alphela's story, people that
we've interviewed already andpeople that we're going to
interview in the future andtheir stories will empower
people and will educate them andwill give them pathways that
(12:04):
they can think about or waysthat they can figure out their
situation by seeing what someoneelse did and how successful
they were not successful withthat.
Speaker 3 (12:15):
So that comes under.
I mean, and you know me, it'sall about inspiring others to
inspire others, like that's it.
Like somebody else's, somebody'sstory can inspire you, and you
know, to take a path right.
And so, as we are inspired bythe people that we interview,
(12:37):
like we're going to pass thatinspiration on to other people,
and that's how we make change,that's how we affect each other
and that's how we, as humanbeings, can be our best selves,
because we care, because we'recompassionate, because we just,
you know, we want a better.
Everybody wants a better life.
Everybody wants to be happy,right?
(12:58):
And when your health is in thebest shape, it's hard for you to
find that, that state of mind,of happiness.
So it is very difficult, andthat's why they call wellness
right.
You know, yes, and so thank youfor that.
You know that addition, that'sa great perspective and I think
people should know that that is,you know that's our approach.
(13:20):
You know we're taking the humanapproach to all of this.
You know it's about humanbeings.
It's it starts with thosepeople sitting in that chair and
the people that have affectedyou in a way that you feel like
you need to go to bat for themand for the ones that are coming
and for the ones that have noidea what's going on in their
life.
Speaker 2 (13:39):
So, yeah, so here we are.
I owe them a great deal, manRight, so here we are closing up
another.
Speaker 3 (13:48):
you know what's the deal with dialysis.
We'll be back.
Hopefully we've added somevalue to you and some
perspective.
I know that every time I have aconversation with you, I learn
something new and I grow, and Iwill pass that on.
So come back, see us again onwhat's the deal with dialysis,
(14:08):
please do.
In the meantime, just do yourbest to stay well, do your best
to educate yourselves, be yourbest advocate and, you know,
come back and help us inspireothers.
Speaker 2 (14:21):
So absolutely Be well , yes, indeed.
Speaker 3 (14:25):
Have a wonderful day.
Popular Podcasts
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.